Table 2 Qualitative Studies
Author, year | Country | Aim | Data collection and analysis | Sample (n) | Patient diagnosis |
|---|---|---|---|---|---|
Aasbo et al. 2017 [30] | Norway | To investigate how carer negotiate their role as carer with patients and healthcare professionals when chronic illness turns into acute exacerbations for patients with COPD | Semi-structured interviews and thematic analysis | 10 carers Age: Range 61 – 84y 4 males, 6 females | COPD with acute exacerbation and some under oxygen therapy |
Bailey 2004 [31] | Canada | To explore the affective component of breathlessness to patient-carer dyads | In-depth Interviews and narrative analysis with ethnography | 10 carers Age: NA Gender: NA | COPD with breathlessness and acute exacerbation |
Bergs 2002 [32] | Iceland | To describe the experience of quality of life of women, taking care of husbands with chronic obstructive pulmonary disease (COPD) | Unstructured, in-depth interviews with carer and phenomenological method | 6 carers Age: Range 47 – 69y 6 females | COPD |
Booth et al. 2003 [33] | England | To explore the experience of breathlessness and its effects on everyday life for patients and carers | Semi-structured Interviews and a coding framework was constructed | 20 carers Age: NA Gender: NA | Cancer and COPD with breathlessness |
Booth et al. 2006 [34] | England | To evaluate the Breathlessness Intervention Service (BIS) | Unstructured interviews and open line-by-line coding | 9 carers Age: NA Gender: NA | intractable breathlessness |
Clancy et al. 2009 [35] | UK | To explore longitudinally the views, feelings and experiences of people with COPD and their carers, at the onset of prescribed LTOT | focused-conversation style interviews and Heideggerian phenomenology | 7 carers Age: Range 50 – 78y 5 females, 2 males | COPD with LTOT due to hypoxemia |
Collier et al. 2017 [36] | Australia | To understand carer experiences and perspectives with caring for individuals on long-term oxygen therapy (LTOT) | Semi-structured interviews and grounded theory | 20 carers Age: NA 7 males, 13 females | Any life-limiting disease with breathlessness and receiving LTOT |
Ek et al. 2011 [37] | Sweden | To illuminate couples ‘experiences of living together when one partner has advanced COPD treated by means of long-term oxygen therapy | Repeated qualitative interviews and phenomenological-hermeneutical methods | 4 carers Age: Range 67—74y 1 female, 3 males | COPD with LTOT |
Farquhar et al. 2017 [17] | UK | To identify the educational needs of carers of patients with breathlessness due to advanced disease to provide an evidence base for further interventional content | Separated in-depth interviews and framework analysis | 25 carers Age: Range 42 – 84y 21 females, 4 males | COPD and cancer with breathlessness |
Ferreira et al. 2022 [38] | Australia | To explore patients and carers’ experiences with regular, low-dose, sustained-release morphine for severe chronic breathlessness associated with chronic obstructive pulmonary disease (COPD) | semi-structured interviews and constant comparative approach guided by grounded theory principles | 9 carers Age: Median 70 (IQR 69—79) 3 males, 6 females | COPD with morphine for severe breathlessness |
Ferreira et al. 2020 [39] | Australia | To understand the experience of living with, and responding to, severe chronic breathlessness in people with COPD from the perspective of the patient and their carer | semi-structured interviews and constant comparative approach guided by grounded theory principles | 9 carers Age: Median 70 (IQR 69—79) 3 males, 6 females | COPD with chronic breathlessness |
Ferreira F et al. 2020 [46] | Portugal | To explore the experiences of carers of people with breathlessness at home and identifying the strategies that these carers adopt to help controlling this symptom | Mixed questionnaire of open and closed-ended questions and qualitative content analysis | 14 carers Age: aged over 63 years (42.8%) 57.1% female | cancer (breathlessness) |
Gysels et al. 2009 [40] | UK | To investigate the caring experience of carers for patients with an advanced progressive illness who suffer from breathlessness | In-depth semi-structured interviews and grounded theory | 15 carers Age: Range 40—72y 15 females | Breathlessness due to COPD, cancer, MND or hearth failure |
Hynes et al. 2010 [41] | Ireland | To explore the experiences of carers providing care in the home to a family member with chronic obstructive pulmonary disease 1 Meaning and experience of carers´ role 2 Meeting the needs of care recipients 3 Interaction with formal health care | Semi-structured interviews and hermeneutic phenomenological | 11 carers Age: Range 20—79y 9 females, 2 males | COPD |
Moody et al. 2004 [29] | USA | Identify perceived needs and what they would have liked the hospice nurses to help them with, what carer do to assist the patients, and what hospice staff could do better | Focus groups and data reduction by Krueger | 6 carers Age: Range 38—65 y 5 females, 1 mal | Lung cancer, COPD with severe breathlessness |
Pooler et al. 2018 [42] | Canada | To explore bereaved carers’ experiences of IPF patients’ end-of-life care with the palliative approach initiated at the first visit to the clinic | Open-ended interviews and narrative approach with thematic content analysis | 8 carers Age: between 50 and 80 s 7 female, 1 male | ILD |
Reitzel et al. 2022 [43] | Germany | To explore the experiences and perceptions of carers regarding episodic breathlessness and how they manage care of individuals with episodic breathlessness | Semi-structured interviews and content analysis | 13 carers Age: Range 50—78y 7 females, 6 males | COPD, cancer, ILD, chronic heart failure with episodic breathlessness |
Rocker et al. 2012 [44] | Canada | To explore the experiences of patients and family carers with opioids for refractory COPD-related breathlessness and the perspectives and attitudes of physicians toward opioids in this context | Semi-structured interviews and interpretive description approach | 12 carers Age: Range 34—75y 5 males, 7 females | Advanced COPD with opioids for refractory dyspnoea |
Schunk et al. 2019 [17] | Germany | To explore the experiences and needs of patients with breathlessness, their carers, and health care providers (HCPs) and their expectations for future service developments | Semi-structured interviews and qualitative content analysis | 3 carers Age: median 53.6y 2 females, 1 male | COPD, Cancer and lung fibrosis with breathlessness |
Sigurgeirsdottir et al. 2020 [45] | Iceland | To explore principal family members’ experience of motivating patients with chronic obstructive pulmonary disease (COPD) towards self-management | In-depth interviews and phenomenological analysis | 10 carers Age: NA 4 males, 6 females | COPD (70% with GOLD IV) |